You gotta have hope

Apologies to lyricist Benny Van Buren!

But I keep coming back to this thought.
A few months ago I said to a nurse, in the context of something else, if you don't have hope what else do you have?

You have to keep trying, hoping, praying - especially as sometimes when your back is pretty much against the wall there really isn't anything else!

So this is where we find ourselves, again, with T.
He isn't gaining weight, his eating is going from bad to worse, his retching spells can be extremely violent even to the extent that he can't swallow his saliva in between and winds up choking on it, and his on-going pain levels make him miserable.

After a particularly nasty bout of retching he came to me and said that he wishes he'd never been born because then he would never have got the gloopies.
In terms of quality of life we've hit close to the bottom for him right now.

The gastros have no real idea - we've tried medication with no response, possibly made things worse - and when a doctor says that 'hopefully he grow out of the problem but it'll take years not months' it doesn't make you very happy as a parent.

And so T is booked for his 4th surgery in 3 years, the 3rd in 2 years.
The surgeon said we have a good odds on chance that this will work but he's not offering any promises. They will be re-siting his gastrostomy button in this surgery. He will do it laproscopically and so he can have a good look around at the same time. He will close the old hole at stomach level and make a new one appropriate to his growth. We're all hoping that he may be able to use the same hole at skin level to bring the new gastrostomy out but that really depends on what he finds and considering the on-going granulation issues he's inclined to make a new exit point too.
He will try to go straight to a button rather than the long dangly tube which causes so many issues last time - but again the surgeon says things heal better with the long tube and, as always, we will do whatever has the best long term outcomes for T. The long tube is only as the tract heals so about 4-6 weeks.

It means an overnight stay in hospital due to needing an ng tube for drainage post op - and I'm hoping it will only be the one night but knowing T anything could happen. From the little I know about this surgery (last time was his fundo AND gastrostomy) it should only be about 30-45 mins on the table - but again he wants to check things out and this is T. He loves to throw curve balls at people!
Also I want to be sure the tube is working well before we go home because I don't need an urgent re-admission on my hands and with T's eating/lack of drinking he really really needs this tube.

And so I find myself hoping, madly, desperately, that this surgery is a good idea, that it will solve all the gastro issues and that it is the right thing to put him through.

I know that the surgeon simply wouldn't cut if he didn't think it was the best option for T. The gastros have suggested it as a possible answer and certainly a 'rule-out' option. There isn't anything else to try and we have to try everything before we resign ourselves to T leading a life of tube feedings and on-going miserable pain.

But there are always risks - not just those normally associated with surgery but to do with the over all condition T is in. The surgeon commented that at least T has good nutrition. Then he has an appointment with the dietician who expresses her concern over his nutrition as he's really only been getting a formula diet and says she wants extensive blood testing to get his baselines. Then that reminds me that last year the GP commented that T's iron levels were low but he'd be okay so long as he didn't bleed. T's eating has only got worse since then and is inevitably going to bleed with the surgery. So off we go to the GP to discuss that issue.
My file notes had said that his circulating levels were okay, just the stores were low. I was able to give the GP the date of the last bloods and so she got his results up and it turns out the results I thought were normal were only just normal.
So he's now on iron supplementation as a pre-op precaution and we also did bloods to check exact current levels.
All of this leaves T in a more vulnerable situation for going into the surgery.

But you've got to hope!
Hope he comes through the surgery fine, hope that the surgery fixes the whole issue and hope that his eating recovers quickly.

In terms of eating he's right back to square one where he was in Feb 09 when he had his initial surgery. He's getting 1000ml/day of formula all through the tube and his eating is minimal at best and over this past month he has even been refusing his brownies due to pain. He has been through so many periods in his life with under nutrition you have to wonder about any long term effects.

And still you simply have to hope - T doesn't give in, and neither can we.
In Benny Van Buren's song - You gotta have heart, from the Broadway Show "Damn Yankees" the baseball team is totally down on it's luck, can't win for losing and yet they look forward to one day when things improve.
And so we do likewise.